Wednesday, December 16, 2009

We ran out of decaf, and even though I knew I should stay away from caffeine, the smell of a freshly brewed pot of coffee at 5:30 a.m. was too strong to resist.

"You know that's caffeine," my husband asked.

I nodded and poured myself a cup. "A little won't hurt me." I gulped it down with a shot of peppermint-chocolate soy milk, feeling my taste-buds shout to my brain, Wake up! Then I began the task of getting Queen Teen ready for school.

Can someone please explain to me why her Jr High thinks it's a good idea to start school at 7:20 am, which means the bus comes at 7:00, which means we have to get up at 5:30 am?

The morning was uneventful. Queen Teen was her usual sleepy self, eating her breakfast with half closed eyes, brushing her teeth, getting dressed with some assistance from me. I was zooming around getting her school snack ready, cleaning her glasses and hearing aids, finding her shoes, all while noshing on a piece of toast. Then I poured more coffee into my tepid cup.

At 7:00, everything went wrong. The battery door of her left hearing aid fell off completely (it's been broken for a while and only stayed on through careful balancing of the hinge). I had to tape it shut to keep the battery in place. Then I shoved Queen Teen's gloves on while the bus pulled up to the curve.

"Mommy, we have to put my coat on first," Queen Teen said.

"No we don't. Hold still. The bus is here." Yanking the sleeve of her rain coat, I fought to pull her gloved hand through.

Queen Teen jerked away. "It won't work."

"Hold still!" I snapped. Then I jerked the jacket off, pulled off her gloves, shoved the jacket back on, and started yelling at her gloves as I tried to force her fingers into them. "Why does this have to be so frickin hard?"

Finally I got her gloves on and then I yelled, "Come on! The bus is waiting!"

I grabbed her arm and pulled the walker toward her, then practically dragged her and the walker out the door. "Move! We're late." The dog met us at the door, blocking our way, eager to dash outside and say hello to the bus driver.

"Get out of the way!" I shouted. The dog just froze. As soon as Queen Teen had a hold of the door frame I jerked the walker away and swung it toward the dog. "I said get the hell out of the way!" The dog ducked.

Whoa... what am I doing? I took a deep breath, carried the walker down the steps, then turned to help Queen Teen out of the house and to the bus. After buckling her in I kissed her forehead and said, "Have a good day."

She just looked at me with big eyes.

The dog stayed out of my way as I walked into the house and shut the door. Damn! I lost it. Again. "Come here, Boo," I said, leaning down and stroking the dog's head. "Good girl."

What happened? Why did I lose it over a broken battery door and a tangled glove? Usually this kind of thing is so normal I just go on auto-pilot. There's always something to slow us down as Queen Teen gets ready for school.

Then I remembered 1-and-a-half-cups of real, caffeinated coffee on an empty stomach first thing in the morning, something I know makes me jittery and anxious, even after lunch. That's why I switched to decaf.

No more caffeine. Some people suffer a personality change on alcohol; I obviously become psycho-agro mom on a cup of jo.

When Queen Teen came home from school I said, "I'm sorry I got so grumpy this morning. I was mad at the hearing aids and got frustrated. I shouldn't have yelled at you. It wasn't your fault."

She smiled and hugged me. "That's okay, Mommy. I get frustrated too sometimes."

Thursday, December 10, 2009

Wednesday, December 9, 2009

On Saturday night, I was beaten up by a "gotcha," a particularly evil, knock your breath out, leave you weeping kind of "gotcha." Parents of Special Needs children know exactly what I'm talking about. A gotcha is when your emotions find a chink in your armor and you become incapable of defending yourself against the grief and rage that you normally keep locked up far away from your daily life.

I was eating a bowl of soup at my friend's house when their daughter came home with her group of friends, all 13-14 year old girls. They bounded up the stairs, giggling and joking, talking excitedly about Dickens Fair and other kids at school, texting one another while conversing (which I thought was particularly interesting since they were standing right next to each other), and appearing so happy it made me smile. When suddenly, I felt my heart constrict and my eyes fill with tears. They're the same age as Queen Teen.

Shit! I pushed the thought aside, focused on my soup and forced myself to keep eating, even though it was becoming impossible to swallow. When the girls took the dog out for a walk, my friend asked, "Are you alright?" That did it. I burst into a deep, wracking sob I couldn't control. She sat beside me and wrapped her arms around my shoulders. "Oh dear, what's wrong?"

Gasping for air, I said, "They're the same age as Queen Teen."

The girls were so happy with their friends, cell phones, and social life. They could sing and dance and perform at Dickens fair, were all healthy and beautiful, and I longed for that kind of joy for my daughter. She is so alone and cut-off from the simple pleasures of good friends and giggling conversation.

I managed to get myself together before the girls returned, but I was tearful the rest of the night. My friends were so kind and understanding and I am forever grateful to have them in my life. The next day I still felt wounded and although I had a lovely time at Dickens with my friends, the emotional bruises from that "gotcha" lingered. I wanted my daughter to share the fair with me, maybe even perform like I used to when she was an infant. She could be a part of that group of girls in a pretty costume, singing Christmas songs and joking about boys.

Three days later, I still catch myself fighting tears. It can take a while to recover after a "gotcha" attack. It seems that no matter how strong or capable I am, I have no immunity to those moments when I am reminded of all that my daughter, and we her parents, have lost.

Monday, December 7, 2009

After school Saturday, I got to stay in San Francisco on Sunday to attend the Dickens Fair at the Cow Palace. I used to work at the Renaissance Faire and many of my friends from there now work at Dickens, so it was wonderful to see everyone. My dear friend Tama even made it that day so she and I spent several hours wandering the fair together after our other close friends had to go back to work as Can-Can dancers, barmaids, and the sister of Charles Dickens. Watching them perform made me wish I could stand beside them in a bright, Victorian dress and and join in the song, but life got too complicated and I live too far away to work at the faire anymore. Happily, I still have my friends who are as close to me as family. Whether I work faire or not, the bonds are strong.

Queen Teen came with me two years ago and enjoyed the beautiful costumes, but the noise was a bit much for her. This year I decided to go on my own and have a little mommy-break.

If you live anywhere near the San Francisco Bay Area, give yourself a treat and go to the Dickens Fair. $22.00 buys you five stages of shows, street performers straight out of A Christmas Carol, Fezziwig's beautiful ballroom to try your hand at waltzing, delicious food, music and wares you won't find anywhere else. You'll leave filled with the Christmas spirit.

Friday, December 4, 2009

Queen Teen has been depressed for months; 75% of the time, she frowns, sighs, complains and argues. She smiles only 25% of the time. Some of this is typical teen-aged angst, but some is due to the impact her disabilities have on her life. I've been so worried about her.

Last week, my husband pulled her Christmas village stuff from the attic while I cleared off the large, "plant window" (it usually holds two glass shelves packed with plants). I found new, temporary homes for all my plants, and then scrubbed the dirt and mold from the glass panes and shelves. Queen Teen watched, but didn't seem all that excited about setting up her village.

"You're taller now, so you can use both of the shelves," I said.

She stood beside the window and measured her height. "I can see the top shelf."

"Yep. And you have a lot more stuff for your village. You'll need the room."

Together we lay cotton batting down for snow and arranged the buildings. I inserted the lights into the buildings then opened the box of village people and handed them to Queen Teen one by one. She smiled when she looked at them and talked about how silly it is to "ride a bicycle in the snow," or "jump rope in the snow." It took about an hour to arrange everything, and then I hung the string of LED star lights above the village so it looks like the aurora borealis. Usually, Queen Teen breaks into a Christmas song once the village is set up, but this time, she just smiled and said, "Pretty."

Had she outgrown her village, too?

Over the next few days I noticed that Queen Teen spent more time looking at her little village people. She talked to herself about what they were doing and how fun playing in the snow must be. When I hung the wreath that we made last year on the door, she grinned and said, "That's pretty." Then the neighbors across the street set up their mega-Christmas lights display (they must use 500 strands of lights!) and that really made Queen Teen excited. Every night we peek through the front window to look at the neighbors sparkling lights and their illuminated snow men and deer.

Two nights ago, Queen Teen took my hand and led me to the village. "It's fun to play in the snow," she said, then threw a cotton batting snow ball at me. She giggled loudly and I laughed, then tossed the "snow ball" back at her. We chatted about what you can do in the snow, like build a snow man, ice skate, go sledding, make an angel, and even jump rope, but that idea made Queen Teen giggle more. Her eyes sparkled as she talked to me. There's my happy girl again.

Last night, Queen Teen sang "Santa Claus is coming to town" in the bathtub, the first Christmas song of the year, and my heart sang with her. It's been too long since she's sung so loudly and cheerfully. She now talks about presents and what she might like, as well as what she might buy for others. Her eyes twinkle when she thinks about Christmas.

Thursday, December 3, 2009

Well, I figured it was a long shot. After four months, the bank finally made their decision about modifying our mortgage. No. It appears that we, A) technically don't make enough money to pay our mortgage, therefor they won't lower our payments (please explain that one), and B) despite the fact we "don't earn enough" have managed to make the mortgage payment every month, which means we don't qualify for assistance because we're not behind on our payments.

So if we stopped paying our mortgage, would they modify our loan?

I keep hearing so-called industry experts saying things like "talk to your bank before you get in trouble with your mortgage." Yeah, did that. Now what? They aren't interested in talking to anyone, and the programs that exist only help people with jobs, not people who are unemployed, or people who have those crazy, ballooning mortgages who can't afford the current payment. We were smart enough to stay clear of those, instead buying a house we could afford and locking in a good mortgage rate. It's always been a tight budget, but if we were working, we could afford our house. And we can't sell. The prevailing rent around here is the same as our mortgage, so why lose our investment and sell the house?

A friend said we should try again because banks are probably like Social Security: they always turn you down for benefits the first time. I supposed there's no harm in trying, but I won't hold my breath.

Tuesday, December 1, 2009

Queen Teen has a new, three inch long, shiny gold whistle that she keeps in her craft basket near the kitchen table. Right before dinner, she blows it, filling the kitchen with an ear-piercing, echoing, high-pitched tone that the neighbors four blocks away can surely hear.

"See what I can do?" she says, blowing again.

I wince. "That's great, honey."

Just this past summer she couldn't blow that whistle at all. Now she takes a deep breath and blows six strong, shrill blasts before setting down the whistle and saying, "I'm getting dizzy." She takes a short break, then blows the whistle some more.

It's therapeutic I think. All that blowing is good for her. I remember back when she was three and her therapist showed her how to blow cotton balls across the table with a straw. It was hard for Queen Teen to do, but after a couple of years, she started to win the "cotton ball races." She also practiced blowing bubbles and noise makers. Then we moved on to musical instruments, like recorders and wooden whistles. She could make thin, gaspy tweets, but rarely a full, strong sound.

Until now. After several months of practice with her new whistle, during which time she tried blowing it at different angles and directions, she finally found that sweet spot that emits the loudest, piercing sound. She has no idea how loud she is because she's hard of hearing. To her, the volume probably sounds perfect.

Sunday, November 29, 2009

My husband and I were excited to finally have a night out together. Between lack of childcare and me in school every Fri and Sat, date nights have become a rare treat. We receive respite from the Regional Center through a non-profit, but our workers have been overbooked and overworked. I called one of our regular workers to see if she was free this week and she agreed to come this Saturday at 4:30. Hooray! I don't have class AND Rick and I can have a date.

4:30 arrived. No sitter. I called our worker and got her at home.

"What time will you be here?" I asked.

"Today?" she said.

"Yes. Today. 4:30."

"Are you sure it's today?"

"Yes. I called earlier this week and you said this Saturday was fine."

"Let me check my calendar."

I heard her asking someone in the background to bring her a folder and when she finally got it she said, "Oh no, I wrote it in the wrong place. I'm so sorry."

"Okay. Well... goodbye."

Great! No date, no respite, no break from the week long 24/7 care-taking marathon.

When I told Queen Teen she grinned and said, "Really? You're not going out tonight?" She gave me a hug and giggled.

I'm glad one of us is happy.

But when I told my husband he was less than thrilled, and I have to admit I'm very disappointed. I adore my daughter, but the non-stop childcare gets exhausting. I need a break, a little time with my husband, adult conversation, and the chance to eat my dinner without needing to help Queen Teen with hers.

Friday, November 27, 2009

On the day before Thanksgiving, a strange package arrived addressed to my husband and me. No name or return address. Inside was a book called "Christmas Jars," and inside the book was an envelope which contained a cashier's check. Again, no name, no address, no note of explanation.

"What's this?" I asked, holding up the check and book.

"I don't know," my husband replied. "Did I sell something on ebay?"

"Maybe, but why the book?"

"Weird."

We discussed the possibilities. He'd just done a bunch of computer work for a friend for free so maybe this was her way of saying thank you, or maybe it was from his other friend who liked to surprise people with silly little gifts. But why the money?

I sat down and scanned the book. The book and the money must be related. Flipping through the pages I read, "Since the first printing of the Christmas Jars, many readers from across the country have contacted me to share their own personal Christmas Jar miracle..." Oh my God.

"It's a Christmas jar. Someone sent us a Christmas jar."

My husband looked up from his laptop. "What?"

I read the passage from the introduction to him and then read more. "I hope that when you give your own jar away, or if you've received this book with a jar meant for you, you will visit the website and tell me about it. The world would love to hear your anonymous story."

We stared at each in silence. A stranger had sent us a check which equaled whatever amount they kept in a jar to help us with Christmas because they felt we needed the help. No strings attached or word of explanation. Just a check and a book.

Neither my husband nor I knew what to say. On the one hand it felt wonderful knowing there were people in the world who wanted to help and had chosen to help us. On the other, it was horrible to think we were one of "those" people: the needy. I looked at our situation and saw two unemployed people who could barely pay the bills and who went to the food bank twice a week to make ends meet. We were raising a child who had major disabilities and we'd decided we couldn't afford Christmas this year. I knew it was bad, but my husband and I tend to be stoic; we just keep working and moving forward without much thought about our circumstances. What else can you do? But to an outsider, I guess our situation looks like something from a Lifetime Movie. Looking at the book and the check, we both felt grateful, humbled and ashamed.

We didn't talk about the gift anymore. The reality of it was too much. Were people really this kind? How could we possibly accept this? Did we deserve this kind of handout? Are we really this bad off that total strangers are sending us money?

It took a couple of days for me to let go of the shame generated from the gift. Feeling shame takes away from the spirit of the gift. Giving us the book and the money made whomever sent them feel good to know they could help. We should accept it with gratitude, not thinking of it as a gesture of pity, but as a sign of good will. And when we're back on our feet, we will pass on our own Christmas jar, hopefully next year.

Whoever you are, thank you for the Christmas Jar. And thank you Jason F. Wright for writing the book.

Wednesday, November 25, 2009

I've been feeling an awful lot of that "humbug" feeling lately. The holiday season is upon us again with all its demands on our time and dollars, heralded by the turkey trumpets of Thanksgiving. I'm too busy and worn out to do the holidays this year! And then I started reading how grateful everybody is, which made me roll my eyes. Oh joy of joys, here we go again. Once a year we all haul out our blessings list and start sharing. Whatever.

This anti-Thanksgiving grumpiness was getting out of control, so today I FORCED myself to think about what I'm grateful for. Come on, Terena, give it a try. You're reacting to the demands other people create around the holidays and how they should be celebrated. Really, Thanksgiving is a relaxing and friendly holiday; all we do is share food with our loved ones and think about what makes us thankful.

After taking a deep breath I proclaimed, "I can do that."

So here's my list of what I am grateful for:

I am grateful that my daughter still knows how to laugh despite all the annoying doctor appointments and therapies and the endless blood tests.

I am grateful she is growing and learning and becoming more beautiful, inside and out, every day.

I am grateful that we've managed to keep our house this long, even though we're both unemployed.

I am grateful for indoor plumbing and heat.

I am grateful for my friends who stand by me and Queen Teen no matter what, and who are not afraid of her disabilities.

I am grateful for Whole Foods Gluten Free Peanut Butter cookies.

I am grateful that my car passed 200,000 miles and still runs so well.

I am grateful that I'm in grad-school learning a trade that will not only provide me with a good paying job, but will be beneficial to others.

I am grateful to the internet for allowing me to share my thoughts and read the stories of others.

I am grateful for my husband who loves me and supports all of my wild ideas (a small press?!) and who chose to be Queen Teen's dad even though he knew she was disabled and would need a lot of extra help.

And I am grateful that my husband and I have the same, dark and twisted sense of humor. It keeps us going.

After I wrote this list, I realized that I have a great deal to be grateful for, from the mundane (I'm grateful for a washer and dryer in my own home) to the global (I am grateful I don't live in Afghanistan). Even though life is difficult right now, with so many challenges there are days I literally have to bury my head under a pillow to scream, I still have so much in my life that is good and joyful. Okay, I get it. This is why people write down their blessings and focus on being grateful. The hard, scary, weary times can quickly block out any feelings of happiness in a day if you let them. By remembering what is good in your life, the bad times lose some of their power.

It's what Thanksgiving is about. I'll try not to forget that.

Go ahead and write your own list, and if you want to share your gratitude's, I'd love to read them.

Monday, November 23, 2009

It feels like I spend a great deal of my time waiting. Just waiting. Sitting in my room surfing the internet, not really getting any work done because at any moment Queen Teen will yell for me to come and help her with something. She can't find her book, or her little puppy figurine. She wants to play with her Groovy Girls but can't get the box down from the shelf by herself. She sneezed but can't find the tissue box. About every ten to fifteen minutes Queen Teen will call me and I will drop whatever I'm doing to see what she needs.

I've tried relaxing and just doing what I want, not worrying about the moment she calls me. Maybe I can sit down and read a text-book, or work on my novel, or fold ALL the laundry at one time. But what usually happens is that I get so frustrated with the constant interruptions that I give up on doing anything that requires too much concentration, like my homework. I do my homework in the morning, or when she's watching a DVD (thank goodness for Sponge Bob!). At night, I wait for her to go to sleep because if I try to go to bed before then she'll pull me out of bed with more needs: she can't get comfy, her pj's are twisted, she needs a drink of water, her hair is in her face.

As soon as she gets on the school bus, the clock is ticking. I rush around trying to get everything done before she comes home, which is impossible, but it makes me great at time management. I've had 14 years of practice. Right now I'm not working, but that will change when I finish school. How will I get anything done once I have a full time job?

By now, I thought she'd be doing more for herself like other children her age. Instead it feels like I still live with a toddler who needs constant supervision.

Do other moms feel like this? How do you balance the waiting with your own needs?

Saturday, November 21, 2009

While my hairdresser was trimming my hair today, she paused and touched a few short hairs sticking straight up from the top of my head."You've been under a lot of stress lately."

"Yeah, a bit," I replied.

"And you had surgery recently too, right?"

"Yeah."

"I can tell." She ran the tiny, one inch hairs between her fingers. "You've had some hair loss."

"What?" Hair loss? Not something you want to hear from your hairdresser first thing in the morning. Or any time, really.

"It's okay. The hair is growing back. But these little hairs may stick up for a while. Just smooth them down with a tiny bit of wax and they should lie down."

More proof that this past year has been even more stressful than usual and my body is feeling the pressure.

I'm already paranoid about losing my hair because I was not gifted with thick, luxurious tresses. Instead I was born with thin, fine, perfectly straight hair, the kind of hair that would look better on a three year old boy than a 42 year old woman. I've pretty much accepted the fact that I'll be wearing wigs when I'm 60. But I really hate being reminded of how thin my hair is and how it no longer grows past my shoulders.

When I was a little girl I used to put tea-towels and baby blankets on my head to pretend it was my long, Princess hair. Although my hair was fine and baby soft, I insisted on growing it long. It was never thick and lovely, except that wonderful time when I was pregnant and my hair thickened and grew to my waist. Of course right after I gave birth it fell out by the hand-fulls, but the hair that remained stayed strong enough to keep long. And then when I got a divorce after Queen Teen turned one, I cut it off short because I felt I needed a change. It never grew back.

And now I'm 42 and my hair line slowly recedes up my temples, so I grew out my bangs to fill in the gap. Eventually that won't work, especially if it keeps falling out from stress.

Thursday, November 19, 2009

My mac book was making weird, grinding noises from the hard drive, so I sent it to the shop. It sat there for over a week and I went through major withdrawals. I love my Mac Book air. So light, so clean, so fast and portable. I couldn't get any serious writing done while it was in the shop, so I worked on collages and waited. And waited. And pined.

At last, my mac book was returned to me on Monday and I did a joyous dance in its honor. Then I sat down and wrote her this poem. Am I twisted to be in love with a lap top?

Ode to my Mac Book Air

Oh lovely machine that you are,returned to me from afar,humming strong and gleaming bright,too long kept beyond my sight.

Tuesday, November 17, 2009

Yesterday, I drove Queen Teen back to Stanford Audiology in Palo Alto. Neither of us was pleased about this. What fun! Sit in the car for three hours, sit in a doctor's office for two, then sit in a car again for another three hours, if we're lucky, because if we hit traffic between Novato and Windsor that will add another hour to the commute. Can't frickin wait.

I woke up at 6 am and rushed around to get myself ready while guzzling enough decaf to shake the cobwebs out of my brain. (Yes, I know it's easier with caffeinated coffee but caffeine makes me more agro than I normally am.) Then I woke up Queen Teen and spent the next hour and a half dragging her from bed to kitchen table to bathroom to bedroom to car. She decided she didn't want to go, and didn't know what she wanted to wear, and didn't want just one pony-tale in her hair, she wanted two, and her socks felt funny and her sunglasses were dirty and she needed books to read in the car but she couldn't decided which books to bring and why did we have to go to Stanford anyway?

It was a very good thing I didn't have caffeine because it was 8:30 before we got on the road and I was so annoyed with being stuck in the car with grumpy teen I probably would have run over the first squirrel who decided it would be fun to play chicken with my car wheel. As I filled up the gas tank (another joy inducing venture), I took a deep breath. This has to stop, I thought. It's going to be a very long day with a lot of driving and if you're this unhappy before leaving town it will be an unbearable day. As I drove the van onto the freeway heading south, I took another deep breath and decided to make the best of it. We can have a good day or a bad day. It's really up to me.

I decided to have a good day.

After a few minutes I felt calmer, not exactly pleased to go to Stanford, but not dreading it as much. And Queen Teen seemed to pick up on my improving mood as well because she started to chatter about how sunny it was and weren't the trees "pretty." We listened to Laurie Berkner and sang along to our favorite songs, although Queen Teen decided that I needed more practice singing. We arrived in Palo Alto with enough time to have lunch at the Stanford mall and then take a stroll. The shops are starting to put up there decorations and there was already a Santa display with Santa Clause greeting children. Queen Teen decided not to say hello, but she grinned when she saw Santa.

The appointment was quick. The doctor checked her ear molds and cast new ones, then checked the settings on the hearing aids themselves. She also fixed the battery door which kept popping open, and worked on the FM system. A lot done in only an hour and half. Queen Teen was relieved there were no long, BORING hearing tests this time. We'll do that when we go back next month to pick up her new ear molds.

We did hit rush hour traffic past Novato, but it wasn't as terrible as it could have been. I stopped at Borders Books in Santa Rosa for a break and so Queen Teen could pick out a few books to replace the ones she's thrown out. After another hour of driving, during which Queen Teen sang Christmas carols, we were home at 6:30, weary and hungry, but not miserable.

As I kissed Queen Teen goodnight, she said, "I had fun with you today. Except for the boring car ride. But it was okay."

Sunday, November 15, 2009

I keep finding toys in the hallway: stuffed animals and baby doll clothes, Berenstain Bear books, Rugrats figurines, a Cinderella Barbie and Baby Cinderella in a matching blue dress, Matchbox cars, bouncy balls, a little plastic Fairy Godmother. Queen Teen tosses out three to four things every day, declaring the item as "boring," and throwing it into the hall. Yes, I try to tell her throwing things into the hallway is not okay, but it seems like this is her way of rebelling against childhood. I will not play with this toy anymore and I will throw them into the hall! So there!

I have several piles of old books and toys in my bedroom now which are in my way, but I'm making sure she's really done with them before I send them to Goodwill. Are you SURE you're tired of playing with the mini-van that goes to your doll house? Tired of reading all the Baby Honey books? Over the years she's declared herself "DONE" with a toy, only to have a melt-down when I told her I gave it away. "But I wanted that!" she'd cry. "You told me you didn't want it anymore." "No I didn't!" I've learned my lesson, so now I wait. But for how long?

Queen Teen is trying very hard to grow up, which is exciting to watch, but also frustrating. Neither of us knows how to do this. She doesn't have any teen-age role models to emulate, and I have to say I'm actually happy she isn't copying the 8th graders at her school. She still thinks boys are "ucky," and cell phones are mysterious. She likes clothes and shopping, but there's only so much we can buy. She spends a lot of time looking at her bracelet collection and necklaces, trying them on, admiring herself in the mirror, taking them off, then yelling for me to help her untangle them. She hates makeup.

Her room is getting emptier and we still haven't found anything to replace all the items she's tossing. What will she do with her time when she no longer wants to play with toys?

Deaf-blind children do not learn incidentally. They need to be SHOWN what is going on around them. They need to be taught how to be social, what to wear, what to say, how to interact with people. She isn't picking up on the subtle clues that other kids do that show them what growing up is like. All she knows is that her old toys and books don't interest her any more, but she has no idea how to take the next step.

I need ideas, people. How do I show my 14 year old daughter how to be a teenager?

Thursday, November 12, 2009

I'm used to these types of proclamations, I mean, "Queen Teen" is more than just a nickname. It's a way of life.

"You don't?" I said.

"Nope. They don't help me so I don't know why I gotta wear them."

"Because your teacher asked you to. She says they seem to help when you're working on your computer."

"Well, they don't. So I'm not gonna wear them anymore." Before I could formulate a response that would, A-encourage her to wear them, and B- remind her that she needs to do what her teacher tells her, she moved on to a new topic. "And my hearing aids don't do nothing either, so I don't know why I gotta wear them."

Pick your battles, I thought. At this stage in the game, the hearing aids are more important. "You're hearing aids do help. You seem able to hear me better with them on."

"No they don't. They just bug me."

"I'm sorry about that, sweetie. We'll go to the audiologist again and she can fix them for you."

Queen Teen shrugged. "It don't matter. I don't need to wear them. And I don't know why no body can do nothing about my ataxia. I hate my ataxia, and nobody can fix me."

"I know. It's really frustrating."

"Yeah." She leaned forward and shouted, "I wish somebody could make my ataxia just go away!"

I gave her a big hug and said, "Me too, baby."

"It's what I wish for. But I guess some wishes are too big and can never come true."

Biting my lip, I forced myself not to cry. What the hell can I say? Everything she's saying is true. Her glasses only help a little, her hearing aids barely help at all, and her ataxia is worse the older she gets. She used to be able to walk without using a walker but now she has to use the walker constantly, even in the house. She used to do her exercises religiously, but now has given up on the idea that strength training will make her better. I encourage and bribe her to keep going, but she gives it a half hearted attempt, lazily doing sit-ups and quitting before she's really taxed.

Queen Teen is burned out, worn out, frustrated and depressed. Nothing has made anything better, not the surgery, the knee braces, the exercises or the therapy. Not the glasses or the hearing aids, not the amino-acids or the walker. She's lost that stubborn gleam in her eye that embraced each new challenge with excitement. Of course I'll get stronger, she used to believe, as she did 20 sit ups. Now she doesn't care.

What can I do to help her? Even an adult would feel this despondent, so how is a 14 year old child supposed to cope? When you realize that all your efforts won't change anything, that things are exactly what they are and you must live with them, how do you keep moving forward? I hit that place a couple of years ago and spent months in a depression so deep I was afraid I might not drag myself out. Eventually I did, because Queen Teen needed me to. What will help Queen Teen learn to live with herself and bring that wonderful fire back into her eyes?

Tuesday, November 10, 2009

I was cruising some of my favorite blogs and saw that Corrie over at "Just because my pickle talks" was celebrating her 100th post. Gee, I wonder how many posts I've written for Gravity Check? Must be almost 100.

Actually, I've written 111. This will make 112.

So today I'm celebrating my 112th post, since I spaced on the 100 mark. Thank you all for your encouragement to keep writing. I love blogging.

Monday, November 9, 2009

Not only did I go out with my hubby on Halloween, I also traveled outside under blindfold for the first time in O and M class. The class met in the St Francis Woods neighborhood in San Francisco at 9 am with our lawn chairs and winter coats to learn how to walk down a sidewalk safely without sight, using our cane.

To celebrate the holiday, our teacher dressed up like a witch, complete with pointy hat and star-etched black tunic. Rather than dress up in costume, we students decided to decorate our canes. I made a large black spider out of pipe cleaners and attached it to the crook of my cane. Here's a picture, taken at the end of the day when my poor spider was looking worn out and squashed:

Another student decorated her cane like a mummy, wrapping it completely in toilet paper. There was a cane dressed in Christmas wrap, a cane made to look like an umbrella, and a "pun" cane with an image of Micheal Cane on the top and Tipper Gore on the bottom (or tip of the cane).

After we showed off our canes and listened to our instructor explain safe cane travel on a sidewalk, it was time to give it a go. I taught my partner first, supporting her with words and occasional contact on her shoulder as she traveled the block I had chosen for her. Overall she did very well. My partner is also in the guide-dog mobility program so has already spent a lot of time traveling under blindfold.

Then it was my turn. I put on my blindfold and began moving down the sidewalk using the touch technique and touch and drag for trailing the edge of the sidewalk. My line of travel was good, but I felt completely overwhelmed by the sensory input, all the smells, sounds, changing textures of the ground, the breeze on my face and the jab of my cane as it found someone's lawn or a crack in the sidewalk. My brain wanted to know what it was. Where is that sound coming from? What is that bumpy, damp feel of the ground that my cane is sweeping over? Where does that cement path just off the sidewalk lead? What type of bush is my cane tangled in?

I am a hyper-vigilant person, one of those people who always knows what time it is and where the bathroom is located. I can quickly sense what a person is feeling and needing and within one minute of entering a party I know who is sleeping with who, who's bored, who's drunk, and who's the person with the best stories. I can diffuse a fight before it starts and find a child when they've wandered off. My empathy and awareness is a gift that helped me survive a tumultuous childhood and makes me a good writer today.

This hyper-vigilance is a liability when traveling under blindfold, though. Trying to figure out what and where everything is makes traveling down a sidewalk without vision extremely difficult. My partner kept encouraging me to focus on my line of travel, but I couldn't seem to stop myself from being flooded with sensory input and questions. The moment my cane touched an odd bump in the sidewalk or brushed against the edge of a flower bed, my body reacted by slowing down and searching for the cause of the change in texture. I wasn't even aware I was doing it until my partner told me I was. She finally said in a firm voice, "I'll reward you by telling you what it is AFTER you get around it."

The reminder to let it go and keep moving helped. After I traveled two sides of the block, I began to tell myself, "It doesn't matter. Where are you going?" Slowly my need to UNDERSTAND my environment subsided, but didn't completely go away. This is going to be a challenge for me because it is completely opposite to my personality. Okay, I admit it, I'm a control nut. I need to know what's happening at all times. I may not be able to control everything around me, but if I'm aware of everything then I can anticipate and react to changes in the environment, especially in the people.

I'm not sure if I'll ever be able to let go of that need for control, but in time I hope it subsides enough to let me travel a straight line down the sidewalk.

Friday, November 6, 2009

On Tuesday I started to feel my head thicken with snot and my throat get sore. Bollocks! I chugged juice, loaded up on Vit C and saw my accupuncturist who gave me herbs and a needle treatment supposed to help boost my immune system so I wouldn't get sick.

On Wednesday I was feeling worse, but I thought it was just a cold. On Thursday I was on the couch watching old movies and drinking gallons of tea, realizing that this was a FLU, and probably THE flu, because that's the only one going around right now. I had to cancel my trip to the California Orientation and Mobility Specialists Conference in Monterey this weekend and instead will be taking the "tea and movies cure" for the next several days.

So far, Queen Teen doesn't show any signs of catching the flu, but I'm really nervous that I've exposed her to something that could make her extremely sick. Curses to college! I probably got this bug on campus because universities are thick with exotic germs and people from all over the world sneezing on each other while sharing drinks and swapping spit. It was just a matter of time before some 20 year old girl with a sick boyfriend living in the dorms coughed in my general direction.

I went to the CDC website to see what the latest guidelines are for dealing with the H1N1 virus and found the page about caring for a sick person at home. Who the hell made up these rules? They are completely unrealistic for a family, especially a mom. Keep the person isolated. Have them use a separate bathroom from others. Wear gloves and a face mask when caring for the sick person. Right.

First of all, I'm the primary caregiver of a person with a disability. My daughter needs assistance with daily living tasks, like eating and dressing, so "avoiding close contact" is impossible. And secondly, a face mask is impossible because my daughter has a hearing problem and is a lip reader. If I could evacuate her somewhere away from me I would, but we don't have any family near by. All I can do is try not to breath on her and wash my hands a lot (which I'm doing so much my skin is cracking).

And if it was reversed, if Queen Teen was the sick person instead of me, the rules still wouldn't work for us. I must be in close contact, I still couldn't wear a mask, and we only have one bathroom. Like most guidelines created by agencies, the rules were created as a "best-practice" with zero thought into reality. Parents must care for their children, period, regardless of their own health or whether or not they wear a face mask. A sick child needs hugs as well as medicine. And sick moms need rest.

Thankfully today I feel better than yesterday, so I hope I'm on the mend. I'll make some more tea, watch a few more movies, and try to take a nap before Queen Teen gets home from school. I need to be strong for when Queen Teen comes down with the flu, because eventually she will. I'm guessing by Sunday, Monday at the latest.

Sunday, November 1, 2009

This Halloween I had class, so my husband Rick decided to join me in San Fran while Queen Teen's bio dad stayed with her at home. They went trick-or-treating and had a nice, long visit, which was good because she doesn't get to see him often. Rick rode the motorcycle down to The City which meant we could tool around on Halloween on the bike, rather than fighting for parking with the mini-van.

After class on Halloween (which I'll write more about next time), Rick and I went out to dinner then returned to our friend's apartment so I could put on my costume. I decided to be Emily the Strange, one of my favorite characters. When I was 12 I was just as dark and sullen, so I have a soft spot for that nihilistic child. With a long black wig, darkened eyebrows I shaped downwards to give me that angry-child look, and black lipstick, I embraced my inner goth-girl. Unfortunately all that black made me look as haggard and sleep-deprived as I feel. Whatever. I pulled on my Doc Martins and my "seeing is disbelieving" t-shirt and declared I'm Emily the Strange at middle age.

We sped across town on the motorcycle under a moon just on the edge of full. A mist poured in from the ocean and I shivered a little in my black leather jacket. The sidewalks were filled with people dressed up in silly and seductive costumes, and the closer we got to Market street, the drunker the people seemed. I felt a rush of euphoria, a tingle of freedom. I was on the back of a motorcycle holding on to the man I loved in the city I loved and for one night I was free. No child to tend, no phone calls to make, no dishes to wash. I am Emily the Strange and the night is my friend.

A friend of ours is in a Sisters of Mercy tribute band called The Reptile House and that night they were playing at a bar called Annie's on Folsom street. We parked the bike and went to the door to pay the cover. $7.00, or $5.00 in costume. Cool. I handed him my $5.00 just as he said, "Seven."

"I thought it was five in costume."

"Yeah."

"I'm in costume."

He looked me over closely, then recognized I was wearing a wig. "Okay, five."

When I walked into the bar I realized dressing up like an iconic goth chick wasn't exactly a great costume to wear to a punk bar on goth night. As I looked around I saw many people dressed in black with long black hair and black lipstick, only they weren't in costume. This was what they wear out, what I used to wear out before I was old enough to get into bars legally (but I managed to). I laughed. Rick said, "I told you."

Whatever. He bought me a saki (I LOVE Annie's because they serve saki) and we found our friend who was about to play drums in the first band, a tribute to Souxie and the Banshees. The lead singer had a bad cold so sounded terrible but had good energy, and the musicians were great. Dancing in the front row, I sipped my little bottle of saki and fell into the music. I have never outgrown my love for goth music and I felt that euphoric rush of freedom again.

That feeling was quickly followed by the stupefying realization that I'm getting old. This was the first time I'd been to a tribute show for a band I listened to when I was young and the understanding that I was that goth girl 20 years ago was stunning. It's all going too fast; I'm not ready to be middle aged. I just figured out who I am and what is important to me and it's too late to go back and start again. Can I please have a little more time?

More friends arrived, both parents who'd also managed to take the night off from kid duty. We drank and chatted and listened to the music and slowly my blues faded (I'd been channeling Emily the Strange a bit too much, I think). When The Reptile House started, I stood in the front row and danced every vestige of sadness away. The euphoria returned as I sang along to the songs I knew and felt my inner goth girl stir in remembrance. I may be older now, but that girl I used to be is still a part of me. She just needs to come out and play now and then.

My husband and I managed to stay almost to last call, then we hopped back on the bike and sped away through the nighttime streets of San Francisco. I held on tight and let him drive, not worrying about where we were or what we should be doing. Rarely do I have a moment where I'm not in control of something, so those moments on the back of his motorcycle were liberating. He's a good driver and I trusted him to get us home. I relaxed and watched the city zip by.

Friday, October 30, 2009

For the last few weeks we've been having a lot of trouble with Queen Teen's hearing aids. Her new ear molds were tight and very hard to insert into her ears. I thought it was because they were new, but when Queen Teen complained of pain, and those complaints didn't go away after a couple of days (she always whines about how her hearing aids "bug" her) I noticed her left ear was looking irritated. Is this an allergic reaction? She continued to use her hearing aids with frequent breaks, but her left ear became even more raw. Plus, I noticed a lot of feedback.

I contacted the audiologist who said the molds might be too big. How can ear molds be made too big if their cast from an exact mold of the inside of her ears? I pulled off her new ear molds and replaced them with her old, too small ear molds, which solved the pain problem, but not the feedback. The audiologist told me to check her ears for wax, which I did, but her ears looked clear. So I checked her ear molds (the old ones) and found a little wax in the tube. The problem was it was deep inside the tube, too far for the cleaning tool to reach.

Here's a trick I discovered. After digging around in my sewing basket for something longer, but not pointed, I found my threader, which is long enough, but thin and flexible so it won't puncture the tubing. With careful swipes, I was able to dislodge and pull out the ear wax.

Unfortunately that didn't fix the feedback problem, so between improperly fitting ear molds and high pitched whining feedback, we have to go back to Stanford.

Did I mention Stanford it three hours away? And that it eats up an entire day and a half of our extremely busy lives?

Oh well. What can you do? Queen Teen is back to hating her hearing aids and is depressed she has to use them. They are uncomfortable and not working properly. Even with them on, she is having trouble hearing me, which makes me wish we both knew more sign language.

Wednesday, October 28, 2009

Queen Teen is having a Halloween crisis. For the last three years she has been a princess, complete with gown and tiara. But this year, when I pulled out her Cinderella gown, she sighed heavily and sat on her bed.

"What's wrong?" I asked.

She shrugged.

"Do you want to be a princess this year?"

"I don't know."

(Great! Here we go again.) "You have this beautiful dress you've only worn once at Disneyland. Would you like to wear it for Halloween?"

"I don't know."

"Do you want to be something else?"

At this, she looked at me and said, "Maybe."

(Progress!) "What would you like to dress up as?"

"I'm not sure."

(Dang!) "Your grandpa sent you some kitty-cat ears. Would you like to be a cat?"

She shrugged. I got the ears and she tried them on, but they wouldn't stay upright on her head, which made her mad. Then we tried the bunny ears her dad had worn with his stilts, but they were too big. I asked if she'd like to be a movie star but she said she didn't know. We were both getting frustrated.

"You only have four days to decide, and if you want my help getting a costume, you need to decide soon."

She shrugged.

"You know, you don't have to dress up this year if you don't want to."

She looked at me with surprise.

I sat on the bed beside her. "Really. Lots of kids your age decide they don't want to dress up anymore." But as I said this, I realized how bummed I would be if she decided not to dress up and trick-or-treat this year. Halloween is my favorite holiday and part of why I love it so much is because Queen Teen has been celebrating it with me. There is nothing like spending this crazy holiday with kids. Queen Teen is no longer a kid, she's a teenager, and she's reached the age where most kids think dressing up on Halloween is for babies.

Is Queen Teen about to give up Halloween, just like she gave up Hug Bear this year?

The next day I asked about costumes again. She just shrugged. I said, "You could be a gypsy."

"What's that?" she asked.

"A person who sings songs and dances in beautiful, colorful clothes, and travels around performing, and tells fortunes."

Her eyes brightened. "That sounds like fun."

"You can borrow my skirt and some scarves and wear your colorful necklaces, even bells if you'd like."

Monday, October 26, 2009

so sayeth Queen Teen. Nor can you have chocolate, fruit loops, caramel corn or sweet tarts. In fact, you shouldn't have these things ever, but now and then is okay, but just for a snack, and not very much.

My daughter really absorbed the "eat healthy" message her schools and I have taught her. I blame Blues Clues and that "Healthy snacks" song. I know I'm lucky. My daughter has never whined for candy while waiting in line at the supermarket, and even when I offer her a sweet, she'll only eat half. When given a plate full of cookies and then told, "help yourself," Queen Teen will eat one, maybe two, then set the plate down and walk away. "You can have the rest."

She eats her vegetables

Since she is under weight by about twenty pounds, she is allowed to eat anything she wants. Of course it helps that her favorite snacks are fish crackers, cheese and bananas. I beg her to have a milkshake, but she'll rarely take it. She just isn't that interested in sweets.

One night while she and I were coloring together, Queen Teen set down her crayon and said, "Can I tell you something?

"Of course." I set down my own crayon and gave her my full attention.

She sighed then leaned forward, staring at me so intensely I wondered if she was going to tell me she had a boyfriend. "When you're not here, Rick gives me too much chocolate."

"I see." I looked down to hide the smile that was sabotaging my serious expression.

"It's a big problem." She sighed again very dramatically, then picked up her crayon and started to color again.

In Queen Teen's world, everything is broken down into compartments. There is good and bad, black and white, yes and no, healthy food and not-healthy food. There are foods you eat for breakfast, foods you eat for lunch, and foods you eat for dinner. This is how she makes sense of the world. Because of her poor hearing and eyesight, it's hard enough for her to figure out the tangible world, let alone all those exceptions to everything. There is no gray area and ice cream is not lunch. This is her own adaptation and I try to respect it. For a while I tried to teach her about life's exceptions and prepare her for the variables and gray areas that are invariably a part of life, but it created too much confusion for her, so I stopped. Instead I go along with her rules about the way things are. Eventually she'll figure out that life doesn't fit into perfect little categories and sometimes it's perfectly fine to eat ice cream for lunch. And dinner. And even breakfast.

Friday, October 23, 2009

Today I ran. Literally. I went for my power walk as usual, soaking in the beautiful warmth of another California Indian summer, listening to the birds chatter loudly in the trees as they make their plans to head south. Do you think all that chatter is the birds debating who should be the leader as they fly South? I vote for Fred.

Fred? He can't find his own nest. I think Linda should be our leader today.

Linda... Linda... oh yeah the bird with the gray spot on her wing.

Yeah that's her.

Linda, good choice.

No, sorry, Linda smacked into a window yesterday and broke her neck.

Oh, bummer...

This is the kind of thing I think about while walking purposefully down the street, arms swinging to the rhythm of my legs.

After half a mile I turned the corner heading back to home and a little voice popped through my imaginings and said, You should run. Run? I don't run. I have a bad knee, a souvenir from when I went backpacking and fell down the side of a ridge with my heavy pack on, only stopping myself from going over a cliff by jamming my leg against a boulder, which strained the knee so bad I hobbled for two months. When I run I can feel my ligaments pulling against the scar tissue. Not pleasant.

How do you know it still does that? When was the last time you ran?

Hmmm... three...no four...five years ago. I think.

You should try and see how your knee feels. If it hurts, stop.

Pondering this idea, I reached a three block section of my route just before the final turn toward home. What the hell? I started to run. Not fast, but a decent pace just a little faster than my walking pace. My legs propelled me forward and my arms fell into the rhythm naturally and I suddenly remembered running like this when I was 12 years old.

I loved to run back then. I loved the freedom and the speed, that sense that you could outrun any trouble that might come at you. I ran all over town, just because I could, not caring what I was wearing or where I was going. Feeling my heart pound and my legs hit the pavement was all I needed to feel strong.

Half way down the street, I suddenly realized it had been 30 years since I ran like that. Oh my God, this hurts! I can't breath! Why am I getting nauseous? Who's bright idea was this anyway? My breath rasped through my nose and mouth and my heart pounded against my ribs as if demanding to know what the hell I was doing. But my legs kept the pace and I refused to stop until I reached the end of the street.

Against my body's protests, I made it and then slowed my pace back to a brisk walk toward home. I was almost to my house before I could catch my breath again.

How's your knee? that little voice in my head asked.

I tuned into my right knee as I walked, waiting to feel that pulling on scar tissue pain. Nothing. My knee was fine. No pain, no ache, not even a twinge. Weird. I figured there should be something to remind me I injured it.

You hurt it 22 years ago. Maybe you're healed.

Maybe I am. But if I am, I don't have any excuse not to run again, other than the fact that running feels awful and only psycho masochists love it. I really doubt I'll ever do it again.

Wednesday, October 21, 2009

Last week I decided to cook a steak, so I went to the grocery store and discovered there are a lot of different packages of dead cow, all arranged from the cheapest, to the most expensive (who the hell can pay $21.00 bucks a pound for meat now-days?). I hadn't decided what kind of beef to cook, only that it had been a while since we'd had a steak and I was hankering for some red meat. After examining the different types, I chose the one that had a good price, not the cheapest, but definitely not $21.00! Then I went home to research how to cook it.

Should be easy, right? Get a pan hot, toss in the meat, season with salt and pepper, turn it over, wait a while, cut it to look inside and see how pink it still is, then remove before all the pink is gone. Then I found this site and discovered there are RULES for cooking a steak. Just like everything in the kitchen, you can't just toss it in a pan and hope it comes out all right.

Then my husband asked, "What kind of steak did you buy?"

"Kind?"

He just shook his head, probably thinking about those frozen dinners again. "How you cook it depends on what kind of steak it is."

"Oh." I don't know what I bought. It was the one that I could afford that didn't look like stew meat. Pulling it out of the fridge, I read the label. "New York," I shouted.

"Great. So how do you cook it?"

Obviously the guy who knows how to cook meat wasn't going to help.

Since the BBQ was out of propane, I decided to pan fry it. On the internet, I found a step by step recipe for how to cook a steak on the stove. I followed as best I could, but when it came time to figure out if it was done or not, I ran into trouble. I like my steak medium-well; just enough pink to be tender, but not bleeding. Achieving this equilibrium of steakiness is not easy, and so, despite the fact the "rules" said to remove it before it was completely done because it would continue to cook for another 10 minutes just sitting on the plat, I let it stay in the pan too long. No one will get botulism from my cooking, that's for sure.

My family sat at the table and I served the steak, which smelled delicious, but required extra bbq sauce to make edible. It wasn't a bad steak, just a little past tender. All right, a lot past tender.

Sunday, October 18, 2009

Yesterday was our first skills test in Orientation and Mobility. Standing in my bedroom with my cane in hand, I studied hard all week, practicing and reviewing the skills: diagonal cane technique, ascending and descending stairs, opening doors, constant contact, trailing... We didn't know which technique until we were with our partner at the time of the test, one-on-one with the teacher, and she said, "Show me..." All I could think was that I hoped I didn't get stairs.

I didn't. My teacher asked me to show her diagonal cane technique, and even though I know that technique very well, my brain momentarily shut off. 'No,' I thought. 'Come on brain, you know this!' I looked at my blindfolded partner for a moment, took a deep breath, and started talking. Slowly the steps grew clearer through the fog of my test anxiety. Step by step I showed her what to do. I ran into one issue when I kept trying to have my student hold the cane with her hand upside down, but luckily I figured out the problem when I stood beside her and kinesthetically sorted out my mistake. No wonder she was looking confused. I got some of the steps out of order, but covered everything, which means I got an A. Whew!

Later that afternoon, my partner and I switched roles and she became the teacher while I went under blindfold. She guided me to another building on the SFSU campus and I got to experience traveling in an unfamiliar environment with a tactile map to guide me. Since I got my BA at SFSU, I wasn't completely unfamiliar with the building, but I haven't been there in 15 years. After the first trip around the hallways that encircle the gym, I began to experience the sensation of auditory space perception. I could sense when it was time to turn down the hallway simply by the sensation of an "opening" of the space. It's difficult to describe. My teacher/partner helped me trust the sensation, and I began to walk without needing to trail the wall to find my turn. I was under bindfold for an hour and found the experience fascinating, but exhausting. Every noise, scent, and feeling became overwhelming and I had a hard time filtering the onslaught of sensation. This gave me a glimpse into what the world must be like for Queen Teen and why sometimes she seems to shut down for brief periods of time.

Then it was my turn to be the teacher and surprise, the instructor was shadowing me for my evaluation. It was the end of the day. I'd just taken off the blindfold after an hour of intense concentration, and now I needed to be the teacher while my instructor watched my work. Lucky me. It turned out to be a great experience and having that one-on-one time with my instructor was really helpful. Our assignment was to prepare a lesson plan with a tactile map and then instruct our student/partner. Since my student is a proficient traveler who's spent a lot of time under blindfold, I planned to test her orientation and problem solving skills. My assigned building was Creative Arts, so I planned my lesson in the music section. Here my student traveled past practice rooms where people rehearsed with their instruments. I showed her the route and then helped her find clues from the surrounding music, especially when she passed intersecting hallways. It took one time around the route for her identify her hallways and keep herself oriented, so then I stepped back and let her do it independently. I was impressed with how well she did and she seemed to really enjoy the lesson. My instructor was pleased as well. She offered suggestions and pointed out a mistake I'd made, but overall she was impressed.

The evaluation makes me think that maybe I actually will be a good teacher when I'm finished with this year of training. I just need more practice with specific techniques.

Thursday, October 15, 2009

For many, many, many, many, MANY years, Queen Teen's favorite sentence has been, "I don't know." Ask her anything and she will almost instantly respond with, "I don't know." Do you want ice cream or a cookie? I don't know. Would you like to watch a movie or read a book? I don't know. Would like me to poke you with a sharp stick? I don't know.

She is capable of saying something else; I've heard her many times. If she really wants something she'll speak up in a loud, clear voice. She'll tell you her opinions, her ideas, her desires and what she doesn't like.

But usually, her response to any question or suggestion is "I don't know."

The other day, I reached the limit of my patience.

"Would you like a cheese quesadilla for lunch?" I asked.

"I don't know."

"Do you want something else?"

"I don't know."

"Are you hungry?"

"I don't know."

"I don't know! I don't know! Can you say anything other than I don't know?"

"I don't know." She shrugged.

"Fine! I guess when you're hungry you'll tell me what you want for lunch. Or I guess I can just cook you anything I want and you'll eat it because you don't care!"

We stared at each other for several moments, me with my arms crossed and she chewing on her bottom lip.

Wednesday, October 14, 2009

Okay I admit it. I am sick. Not crazy, gonna die, full of snot sick, but run down, worn out, sore throat, cough, runny nose, headache like I was hit with a sledge hammer, sick. I need tea and rest and warm blankies. I need sympathy and time to heal.

But no! I am a Mom, and mom's don't get sick days. Plus, I am a student, and students really don't get sick days.

So, I'm cramming for my exam (I have to demonstrate how to teach an Orientation and Mobility skill, but I won't know which one until my teacher tells me which one at the start of the test. So I have to study all of them. I hope she doesn't choose stairs). And I'm writing three lesson plans (Three! All due on the same day as the exam. Please!). And reading my textbooks. And reading blogs and wasting time on Facebook. Wait, scratch those last two.

I am the only parent in my class. The instructor has children but they are grown up and away to college, so it's just juggling parenthood and school, doing homework late into the night while taking care of a child who still thinks sleeping all night is a waste of valuable time. Yeah, being a graduate student is really fun when you're sleep deprived. And sick. Did I mention that I'm sick?

Pass the herb tea and wish me luck this Friday. It's gonna be a long week.

Tuesday, October 13, 2009

I want to share this great blog with you all. Excellent writing and very informative. Called The Itty Bitty Farm in the City, it is the blog of an urban farmer named Heidi. She was just interviewed for the San Francisco State Journal Golden Gate XPress. Hear her interview here, complete with photos.

A friend recommended this blog to me a while ago because I've been considering getting chickens next spring. I'm really feeling the need to slow down my hectic pace and pay more attention to the here and now by planting a garden and watching it grow, getting some chickens and caring for them, and learning to cook (which so far isn't going too well). Is it my age (42)? Or is it a sign of our times. It seems like many people are picking up a hoe and planting seeds.

Monday, October 12, 2009

I wanted to see what the "foodies" read, so I opened the food section in the San Francisco Chronicle newspaper (online it's SF Gate). There was an article sharing three chicken recipes called "Three Hens in a Pot." The author described how the smell of the rosemary and wild thyme emanating from the pot of chicken brought her a sense of "satisfaction and goodwill." Of course, it helped that the author was having dinner in a chateau in Provence, France while drinking good wine with new friends. Then I scrolled down to the recipes for Poule a Pot, Coq a Vin, and Poulet a la Creme.

Hmmm... could I make something like this? I started with Poule a Pot, which has 31 ingredients. Dang that's a lot of ingredients!

I stopped reading after ingredient number 10.

The other chicken dishes had fewer ingredients, but required items I couldn't afford (brandy and burgundy?).

Then I tried reading the article, which told all about the writer's experience with that amazing dinner in Provence and went on to explain some of the history of the dishes being prepared.

You know what? I couldn't care less.

Do I need to care about how chicken is cooked in Provence to be a good cook? Or is the mere fact that I don't give a rat's-ass about how chicken is cooked in Provence a sign that I will never be a good cook?

Wednesday, October 7, 2009

Queen Teen had an audiology appointment Wed. morning at Stanford. I decided to make it a fun trip and leave on Tuesday, giving us an extra day to play, plus a stay in a motel that night. On our way to Palo Alto that day, we stopped in Santa Rosa to have lunch with Rick, then we drove to San Francisco where we took a break at my school, San Francisco State University. I gave her a tour of the campus and showed her where my class is.

"Now you know where I am every Saturday," I said.

"Cool," she replied, looking around the classroom with a satisfied grin. "I think it's funny all of us are going to school."

But the highlight of the day was when I introduced her to one of my teachers. Queen Teen was shy at first, but warmed up quickly, especially when she discovered that my teacher ALSO wears hearing aids.

"See," my teacher said, pulling her hair back from her ears. "I have them too."

She looked at me and then pointed to herself. Her eyes sparkled and she sat up taller in her chair. "There are other people different like me!" Her declaration sounded like the words of a scientist who'd just discovered intelligent life on Mars.

My teacher and Queen Teen talked about sign language and hearing aids, and as I listened to Queen Teen's animated chatter I realized what a relief this discovery must be for her. Not only are there people "different" like her, but there are adults who have jobs and are capable. This woman has hearing aids, but she's my TEACHER. What a mind-blower that must be to a teen girl who thinks she's the only "weird" girl on the planet.

We continued our trip to Palo Alto and landed at the Stanford Mall. I love this mall; it's so beautiful and polite. The shoppers and workers smile. Sculptural fountains cascade into streams of clear water which run through the heart of the shopping center, framed by ferns and exotic plants. The shops are filled with beautiful clothing and jewelry I can never hope to afford, but we both love to explore. Queen Teen fell in love with a Betsy Johnson handbag (shiny purple and decorated with sparkling red and gold flowers. $300!). We discovered a tea shop and sampled the most delicious Jasmine tea I've ever smelled. The Stanford Mall is so far from my own reality, visiting it is like taking a trip to Monaco.

Tuesday was fun and relaxing, which was an excellent balance to Wednesday. NOT fun and extremely boring.

Her appointment was at 10:00 am and we were seen right away by her audiologist, Anne. Queen Teen really likes her, but she doesn't like the tedium of having her hearing checked. It took an hour and a half to test Queen Teen's hearing. She dropped blocks in a box when she heard the tone, and pointed to a picture when she heard Anne say the word. After that came programming the hearing aids and then trouble shooting the FM system. The device has had intermittent problems and Anne worked hard to figure out what was causing the device to stop connecting to the hearing aids. Of course the FM worked perfectly, just like when you take your car to the shop because it keeps making a horrible sound when you idle at a sign stop, but the car works flawlessly for the mechanic. Anne say FM devices are notorious for intermittent problems, so she wants me to keep track of when and where we are when the device stops working. What's in the environment can effect the signal, especially motion detector lights and wireless networks (seeing as we have five computers hooked up to a wireless network in the house, I'm thinking that might be a big problem).

After two hours, Queen Teen slumped in her chair, looking dazed and declaring, "I'm so bored!" An hour after that Queen Teen was just dazed. She'd stopped hearing anything, her system shutting down from fatigue and stress. At 1:00 we stumbled out of the basement where Audiology is tucked away, hungry for food and fresh air. We had a nice lunch and I grabbed one more cup of tea, then we hopped on the freeway heading home, hoping to stay ahead of Bay Area rush hour traffic. We made it to Novato before finding the stop and go traffic which we sat in all the way to Santa Rosa.

I decided she needed to have fun on Wednesday too, so we stopped at Border's books. She bought two new books and two new coloring books, then we had a snack at the cafe. There was another hour of driving before we got home at 6:30.

The hearing test showed that Queen Teen's hearing is reduced in her right ear, but her hearing fluctuates so much it isn't evidence that her hearing overall is worsening. Anne programmed the hearing aids to allow for volume control to give us an option for those days when Queen Teen seems to be having a harder time than usual understanding speech. We go back to audiology in six months.

I am impressed with how hard Queen Teen worked during the hearing test and her patience overall. Three hours would have been a strain for anyone, let alone a fourteen year old girl with a neurologic disorder. When I told her how proud I was of her, she smiled and said, "Yeah, but it was too boring."

Tuesday, October 6, 2009

Queen Teen doesn't outgrow her clothes quickly anymore, therefore we don't cull her clothes every six months. Instead, shirts and pants had accumulated to the point where they fell out of her cupboard every time she opened the doors. She couldn't find a specific shirt she wanted to wear and she couldn't keep the clothes organized.

It was time to get rid of clothes.

We spent an hour going through all of her clothing, including the dresses and jackets jammed into her tiny closet. I let her decide what she wanted to keep. The decision was no longer based on if she can still wear the item, it was based on if she was SICK of the item.

This process struck me as another sign my little girl is no longer a little girl. She doesn't outgrow clothes anymore, she changes her mind. Her tastes in fashion change, not her inseam or waist line. With a wave of her hand and scowl she tossed shirts and pants and dresses I thought were cute. Nope. She refused to keep anything white or too pink. I bit my lip when she held up a lovely dress she'd only worn twice (but owned for two years) and said, "Ugh. I'm tired of this." Toss. She filled two grocery bags full of clothing to take to Goodwill.

Her clothes are now tidy and her closet is less cramped. With a grin she inspected the shelves where her clothes are folded neatly (a cupboard is easier for her to manage than a dresser). "Much better," she said.

Sunday, October 4, 2009

As some of you know, I am enrolled in the Master's Orientation and Mobility Program at San Francisco State University. This is my second year, and the year I get actual, hands on training in O and M. Even though my classes are Friday and Saturday nights, I love them. The teachers are knowledgeable and excited about O and M and my fellow students are a fun and diverse group of people. With only 12 in the class, we really get to know one another.

The lessons are intensive and quick, but so far I've managed to keep up and learn the skills to teach others. While under blindfold I've learned to walk a straight line with my cane by using diagonal and constant contact technique, to trail a wall with my cane to locate landmarks, to open and close doors, estimate distances, and make accurate turns.

On Friday night, we learned how to go up and down stairs. The idea of using stairs under blindfold is pretty scary, but we work in teams with a TA and/or the instructor to guide us, so the danger is minimal. It's more stressful for the student teaching the skills to her partner who is under blindfold. There are numerous issues to be aware of while teaching a visually impaired student to walk up and down stairs safely. They have to approach the stairs; find the first riser; find the handrail; align their body to the stairs so they climb them straight; determine "the height of the riser and the depth of the tread"; shift their weight forward and figure out how far in front of their body to hold the cane (one step ahead or two); remember to keep their cane lifted one inch against the riser so it doesn't drag and get caught on the stairs; walk up the stairs while holding out their cane and hanging on to the handrail; then remember to "sweep" with their cane when they reach the landing AND remember how many steps ahead the cane was so they count those steps to ensure their feet are on the landing before letting go of the handrail.

Down stairs is pretty much the same process, except there are three different ways to hold your cane depending on the surface of the stairs, and you shift your weight back instead of forward. But going down is usually scarier because you don't have the riser against your cane to guide your steps. Plus, gravity likes to pull objects down stairs, rather than up.

Imagine that you've just been taught how to teach a student to go through all these steps, and now, only an hour later, YOU have to teach the student yourself. Yeah, I was pretty freaked out.

I wrote copious notes and asked lots of questions. There were so many details I needed to understand so that I could explain the process to my partner/student. My head was packed with every nuance and fact, so much so that when we arrived at our designated stair case and I began to teach my blindfolded partner, my brain completely shut down. What do I tell her to do first? Square off to the steps. Yes, that's it. Then walk forward until the cane finds the riser. Then anchor cane. No, sweep cane? Was it diagonal or constant contact? How do you find the hand rail? Step to the right? No that's not it. Slide the cane to the right? Take a step, no... first anchor... but she's too far from the hand rail...

The TA kept stepping in to help and she was wonderful. So patient. I knew we only had an hour to have three skills checked off, but she said, "Don't worry about the time. Just go through the steps one by one." My poor partner was under blindfold the entire time, listening to me fumble around with the words, holding a position far too long, and probably terrified that I was the one trying to teach her how to go up and down stairs. I couldn't even follow the instructions, how the hell was I going to keep her safe?

The TA smiled and said that happens sometimes. The class goes fast and everybody will have a bad night now and then. My partner said I was doing fine and don't worry about her. I fought tears and just focused on getting through the lesson. At least I could show my teacher I don't fall apart or give up when it gets hard.

Somehow we got my partner up the stairs twice, and down the stairs once, but I couldn't be checked off on the skills because I couldn't recall what to do without help. I think the problem was that I got so bogged down in all the details, I lost the specifics. This isn't the first time something like this has happened to me. I tend to analyze and ponder information in depth until I understand every nuance. I break the problem down to its core, then rebuild it with a new understanding. There is no time to do that in this class. We learn several skills each day and I just have to memorize the steps and learn to teach it. Understanding will have to come several days later.

Next week it will be my turn to go under blindfold and have my partner teach me. In the mean time, I'll sort out the actions of climbing stairs and then practice teaching the process to my husband. Because eventually I'll have to be checked off stairs in class.

How much you want to bet my teacher chooses stairs when she tests me on my skills?

Thursday, October 1, 2009

I don't know if I've said this before but I am not a cook. Luckily, my husband is a great cook or we'd all starve. Not only am I not a cook, I probably shouldn't cook. Anyone who knows me has probably tasted one of my "creations" and thought I should stay far away from a stove. Even a microwave is iffy.

I've decided to change that.

No, I haven't suddenly fallen in love with cooking. To me, cooking is something you have to do because food tastes better when it's warm. I have never been nor do I imagine myself ever becoming a "foody." But lately I've felt this urge to pay more attention to the every day, small, important things in life, like food and shelter and growing a garden. Maybe it's a middle-age, pre-menopausal thing. I've spent my entire life being supremely, intellectually creative, putting all my energy into acting, dancing and writing, saying I didn't have time to clean or cook a meal because I had more important things to do. I was an ARTIST.

My husband was probably as surprised as I when I said, "I'm going to cook meatloaf."

He blinked a few times, then said, "You're brave."

"Why do you say that?"

"I never have luck with meatloaf. It's always gooey on the inside and burnt on the edges."

"We have all that hamburger in the fridge we need to use so I'm going to make a meatloaf. I haven't had meatloaf in years."

"Sounds good." I'm sure he was thinking about the frozen dinners in the freezer he could nuke if my meatloaf turned out as well as my other attempts at cooking.

The reason I haven't had meatloaf in years is because I'm a Celiac, which means I can't eat anything with Gluten, like wheat, barley, rye, or spelt. Most people make their meatloaf with bread crumbs, so I can't have it. Seeing as my bread is expensive, I decided to skip the breadcrumbs and instead used grated potatoes. We had several sitting in a bag in the pantry needing to be cooked and I read on a Celiac forum that grated potatoes work well.

I mixed up the meat, potatoes, Worcester sauce, tomato sauce, salt, pepper, Italian seasoning and one egg in a bowl, then flattened it into a 4 by 8 inch baking pan. After topping it with more tomato sauce and Worcester, I put it in the over to bake for 40 minutes. Simple recipe. Even I could figure this one out.

Did I cook something edible? The meat cooked all the way through, the edges didn't burn, and it smelled delicious. The potatoes cooked all the way, but stayed a little firm. I liked how it tasted, but since I haven't had meatloaf made with bread crumbs in over 10 years, I can't really compare it. My family ate it and my husband said it was good. Even my daughter ate it, although the strings of potato were weird.

So, that's my attempt to cook a meal from scratch, following a recipe in my Gluten Free cookbook, and using ingredients already in my house. No one got sick or begged for a TV dinner. However, the dog is probably bummed it turned out so well because she won't be getting this experiment.

Tuesday, September 29, 2009

Queen Teen chooses her own clothes to wear to school, as she should. A 14 year old girl knows what she wants, even if she won't tell you what it is. For the most part she has a good eye for fashion and color, and she refuses to wear anything too revealing. No hoochy-mama, MTV inspired outfits in her closet, thank goodness. I only have to step in occasionally, like when she tried to wear an orange t-shirt with purple polka dot pants. She wears a lot of interesting outfits, but that one I couldn't let her leave the house in.

I also step in when it comes to weather. One morning about three weeks ago, she insisted on wearing her Levi mini-skirt, even though it was 50 degrees that morning and wasn't expected to get warmer than 75. I told her to wear leggings which she could take off later in the afternoon, but she refused.

"Fine. But your little butt is going to freeze on those bus seats," I said.

She triumphantly got dressed and then walked out to the bus. When she sat down on that cold, plastic bus seat her eyes widened in surprise. Wrapping her arms around her, she tried to smile at me, but I knew she was freezing.

Told you!

This morning is even cooler and it's supposed to stay cool and cloudy all day. I saw the clothes she had picked out for herself (a blue top with glittery butterflies and a pair of checked shorts) and switched the shorts for a pair of jeans. When Queen Teen saw this, she was not pleased.

"I already picked out my clothes."

"I see, and they are very nice, but it's cold this morning and you need long pants."

"No I don't."

Refusing to take the bait, I said, "Open the front door and see for yourself."

She glanced out the window and saw the sun wasn't up yet, then stood. "Snap-snap" went the breaks on her walker as she released them and stomped out of her bedroom. I followed and helped her open the front door. Cold air rushed into the room, making us both shiver.

Queen Teen stood in that cold air for a moment, then she looked at me. "I need to wear long pants today."

Monday, September 28, 2009

Queen Teen and I popped into the market yesterday for eggs and cooking oil. At the checkout I handed the cashier $10.00 for the $5.20 bill. She started to count my change. "That's $90..."

I said, "Wait. I gave you a ten, not a hundred."

The woman's eyes widened. "You did?"

"Yes. You're giving me too much change." I laughed. "I mean I'll take it if you're giving it away..."

"I can't believe I did that. Thank you!"

The man standing behind me in line said, "You just passed the integrity test."

"Pardon?" I said.

"You passed the integrity test by not taking that money. You will be showered with blessings now."

The cashier handed me the right change (four ones and some change, which looked a lot smaller after a handful of twenties) and nodded in agreement with the man. The woman behind him in line smiled and said, "You are blessed."

"Showered in blessings," the man reiterated.

I thanked them and left the store, but as I we walked home I pondered that. It hadn't occurred to me that I could keep the money. I told the cashier her mistake before that thought got a chance to whisper because I knew the cashier would get in a lot of trouble if her drawer was missing $94.00. And I didn't do it out of any desire for "blessings." That whole concept that if you do something good something good happens to you bothers me. Shouldn't you just do good because it's the right thing to do? And besides, if I believed in the theory that good works create good things for the person doing them I would have quit doing any good a long time ago. I have yet to see a single blessing from my sense of honor.

I told my husband what happened and he only half jokingly said, "I would have kept the money."

"Really?"

His tone changed and he said seriously, "We could really use that cash for groceries."

He's right. Now that he's unemployed we can barely make our mortgage and we are now frequent users of the food bank. $90.00 bucks would have payed a bill and would have lessened some of the fear in this house. No. I refuse to start stealing to make ends meet, which is what keeping that money would have been. Theft. The money wasn't ours, period.

But who knows... if things get bad enough maybe next time I'll keep the money. I imagine that we all have our tipping point, when things get so bad you get desperate and stupid.

Thursday, September 24, 2009

Last night, Queen Teen stood up from the kitchen table and then promptly fell, her knee twisting under her, sending her crashing against the metal garbage can and smacking her foot on the side of the hard, wooden kitchen table. Of course I was on the other side of the kitchen with my back turned, so there was no way I could break her fall. She immediately started to cry, her body shaking so hard her teeth chattered. I dashed to her and started to look for obvious injuries. Did she smack her head? Was there any bleeding? Anything broken? Her knee was still tucked underneath her so I slowly helped her untangle her legs, relieved that her knee seemed fine because there wasn't any pain as she straightened it out. But then I saw her foot, which was bright red and already starting to swell.

Rick got her off the floor and carried her to her bed while I grabbed the ice pack. We got her as comfy as we could, then put the ice pack on her foot, which made Queen Teen shout, "That's cold!"

"I know," Rick said. "It's supposed to be. But you need to keep it on so your foot doesn't get too sore."

She sighed and then looked at me, her lips in a pout and big tears rolling down her face. "He's right, honey."

I sat with her while Rick ran to the drug store for kid strength Ibuprofin (ever notice no one will get hurt UNTIL you run out of it?). Her entire body shook from the cold pack on her foot, so I wrapped her up in the blue blanket Aunt Tama had made and held her close. She was shaking so badly it was like we'd set her entire body on ice. I guess this is her wonky neurology reacting to the presence of cold; it can't differentiate a little ice on one part of her body from a lot of ice on her entire body.

Rick returned with the medicine and we dosed her up, then took a look at her foot. Thankfully, it didn't look broken, just badly bruised.

I let her sleep in this morning to see how she was feeling before sending her to school. Her foot seemed a lot better and she could put weight on it, but her heart was still aching. While eating her breakfast she softly said, "I hate my ataxia." Then she started weeping, big, racking sobs that made me want to burst into tears too.

We sat together quietly, my arms holding her tight, while she cried. Sometimes a girl needs a moment to feel sorry for herself.

When she calmed down I gave her a donut to go with her eggs, but I knew she was really depressed when she only ate half of it. She talked to me about how much she wishes she'd never been born with ataxia, how she wishes she was more like the other kids, how she's the only one who falls down all the time and has to use a walker. "No body else in my class has this."

"You're right, but they all have other things they have to deal with." I told her how some of the kids in her class have trouble learning, trouble controlling themselves, and trouble taking care of themselves. Some of the kids can't run very well or throw a ball or jump rope because their coordination is poor. They may not use a walker, but they struggle with disabilities just like she does.

"Really?" She wiped the snot off her face.

"Yep. And so do I. Remember how I can't see out of this eye very well?" I pointed to my left eye.

"Yes."

"Because I can't see very well, I'm always running into things on this side of my body and getting banged up. It's annoying! And I tend to trip over things more than other people because my vision doesn't work as well as others. I hate it."

She frowned. "Me too."

"Everybody has something they have to deal with, honey. You just have more to deal with than most. I know it's frustrating and depressing and I'm so sorry I can't do something to make it better. But I'm so proud of you for hanging in there and trying so hard. I think some people would just give, but not you."

"I wish somebody could make my ataxia go away!"

"Me too sweety."

She curled up in my arms and cried more. After a while, she pulled herself together and I asked if she was ready to go to school. "Yes," she said.

At school the kids greeted her with cheers. "Queen Teen is here!" Her best friend raced up to her and gave her a big hug. One of the students told her how he fell down two days ago and he got hurt too. When I left, Queen Teen was at her desk, visually wobbly, but smiling again.

Her ataxia becomes more and more of an issue for her, especially now that's she's 14 and intentionally compares herself to others. She cares what people think of her, how she looks, how she's different. No 14 year old girl wants to be "weird."

My daughter was born with visual, hearing, and motor impairments, so learning to walk was a difficult task. She used to fall down all the time! We started calling these falls a "Gravity Check," which made her laugh, get up off the floor, and try again.

Her Royal Highness, Queen Teen

This is Queen Teen, age 15. The little girl jumping on the bed is Queen Teen, age 4

About Me

Playwright, author, gardener, Super Mom, Johnny Depp fan and struggling Buddhist. Seriously, I really don't need to reach enlightenment in this life-time, so could you back off a little on the dharma lessons?